Thursday, 12 July 2012

Why are we waiting?

Whenever politicians are due to proclaim on issues of health
or social care, my heart invariably sinks. Well intentioned though some may be,
and whatever party-political persuasion they have adopted, I always feel that
they never quite grasp just how personal, and therefore important, these policy
areas are to the people they are in parliament to serve.

Our well-being, and any decline in that which results in the
need for care, is something that occupies most people’s minds at some point,
and with increasing frequency diseases like dementia are pervading into
previously happy families, bringing with them huge emotional and financial
costs and, unlike in the political world, decisions that cannot be avoided.

No one is denying that care is hugely expensive. It is
labour intensive by its very nature, needs to be extremely mobile and flexible
when helping to keep people in their own homes (which undoubtedly is what the
vast majority of people want, no matter what their age or needs) and involves
huge overheads and logistical problems if someone does eventually need residential
care.

It is also something people really struggle to plan for,
mostly because it is impossible to predict if and when illness may strike and
if it does, working out what you may have to pay to receive care as there is
currently no universal standard on accessing care (all 152 councils in England
can set their own eligibility criteria).

Last year it was recommended that a cap should be introduced
so that people know that they will never have to pay more than £35,000 in their
lifetime for care. Naturally this raised expectations that finally, after so
long in the wilderness, social care would become a transparent system whereby
you knew the maximum you would have to pay should you need these services, and
families would not be in for a nasty surprise.

Typically, however, because politicians need to look at
‘cheaper options’ there is still no concrete plan to move forward with
legislation that is craved by people whose lives are affected by this every
single day. I have friends whose parents were forced to sell their homes to
fund care, losing family homes and inheritance to pay for something that throughout
their working lives their parents had believed they had already paid for should
the need for care arise.

I accept that the state has burdens on its resources that
outstrip what is available to spend, and care with its high cost, complexities,
and the growing demands of an aging population is a massive drain on budgets
already, just by funding people who do not have any assets to pay for their
care. Ultimately, however, this is about long-term strategy, effectively
spending to save. Without a clear, fair and workable social care system,
healthcare costs spiral. The huge injustice of the blatantly two-tier system we
have now, right down to the differences in residential fees being paid by privately funded
and publically funded people, has to change, and fast. If people are going to
have to contribute to their care costs, they should know what their maximum
liability will be, otherwise old-age and ill-health become like playing roulette.

I also feel, probably because of my personal experiences,
that there is nothing more important to fund than the care of our most
vulnerable people. Either England is a
compassionate society or it isn’t, and while our politicians decide whether it
is, people can spend weeks languishing in acute hospital beds, costing the NHS
a fortune because they do not have the right care package, or being sent home
with inappropriate or non-existent care packages that mean they will be back in
the very same hospital bed within a few days or weeks.

So what have the government offered people in England? A
belief that capping care costs is the ‘right basis’ for change, but no commitment
on what the change will be. A deferred loan scheme for people who need to pay for
residential care, meaning that the cost of care can be taken from their estate
after their death. However the state will charge interest on this (currently,
where this scheme is available, interest is not charged). A national standard
for getting access to care, ending the postcode lottery where councils set
their own criteria for funding (although if your council happens to be more
generous than others you may be in for a shock), and a pledge that you will be
able to move your care package to another local authority should you wish to,
without having to be re-assessed.

There is also a proposal to pilot a scheme to make personal
care at the end-of-life free, to reduce the burden on hospitals. On the face of
it this is an excellent idea, but it has to be borne in mind that if people are
not able to have the care they need in the months or years preceding this time,
the end of their life may come considerably sooner than it should do, which in
any compassionate society is a scandal.

The glaring omission comes in the lack of a real framework
for change, and on the key issue of capping fees, we are no further towards a
resolution than we were before the Government’s announcement. In fact,
potentially there may be no concrete decision until the next spending review, so
it is possible that legislation is years away. The government say they want
people to, “Get the care and support that they need to be safe and to live well
so they don't reach a crisis point,” but by delaying this decision for such a
long time, many people will wonder if those in power really care about their
well-being at all.

Constantly fighting the system, trying to work out what you
are entitled to, at the same time as dealing with the trauma and emotional
upheaval of a loved one with a disability or illness, is exhausting for
families at the very moment when they want to spend quality time with their
loved ones, and particularly in the case of terminal diseases like dementia,
make the most of every single day.

The plan to cap care costs may be on hold, but sadly the
need for care will never be on hold. The politicians may want to delay their
decision, but every day people across England are faced with health and social
care decisions that cannot be delayed. Some of us do not get to walk away and
think about what we are going to do for a few years.

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About Me

I'm a campaigner and consultant, writer and blogger. My dad had vascular dementia for approximately the last 19 years of his life. I aim to provide support and advice to those faced with similar situations, inform and educate care professionals and the wider population, promote debate and create improvements in dementia care.